Payments to Research Subjects Margaret Byrne Department of Epidemiology and Public Health

Summary of talk Why are incentives used? Do they work? Ethical concerns with use of incentives Practical concerns with incentives

Why are incentives used? - individuals believe their time/effort should be compensated for - individuals give up work or leisure time to participate - procedures might be onerous or unpleasant - need compensation to be able to participate

Do incentives work? Yes! Pre- and post natal medical care Smoking cessation interventions Clinical trials Drug treatment trials/interventions 57-90% cite incentives as the motivating factor to participate

Ethical issues surrounding incentives Positive arguments Negative arguments

Positive arguments Effectiveness at recruitment – saves time and money on research Helps with retention Recruits a more generalizable sample Reduces therapeutic misconception

Negative arguments Financial incentives are coercive Payments should not be used because they will influence people to participate – even if not coercive

Financial incentives are coercive Coercion necessarily involves a threat Incentives for participating are an offer, not a threat Unduly influential?

Other ethical debates Individuals sign on to too risky studies Undue research burden on the poor Individuals lie about eligibility Payment “cheapen” goals and integrity of research Patients in clinical trials already benefit

Risk of trials Payments may “blind” participants to the risk of the trials People are often paid for more to take on risk

Undue burden on poor Not offering financial incentives to poor when we would offer to wealthier is paternalistic Denying individual’s choice/chance to improve situation Research shows wealthier are more influenced by the money

Lie about eligibility Possibly true Screening procedures should resolve problem – not banning payments

Payments “cheapen” research

Patients versus healthy subjects Argument that being in trial “offers people desirable therapeutic benefits” so shouldn’t need to pay Research should only be done under conditions of equipoise Argument reinforces the therapeutic misconception

Practical issues of using financial incentives How large should the payment be? Balance of Enough to be effective Not too large so that we are wasting money Very little research on this

Practical issues of using financial incentives Although not coercive per se, need to take people’s perceptions and situations into account Too high/ pressure from family Too low, we may be exploiting participants